Cerebral Palsy Research Network (CPRN) founder Paul Gross met today with the CPRN Data Coordinating Center staff led by Dr. Susan Horn to review the CPRN Registry Common Data Model. The group reviewed the data elements that have been developed by the CPRN subspecialty groups for demographics, diagnosis, orthopedic surgery, neurosurgery, physical and occupational therapy. The DCC staff also presented the proposed database design to capture the CPRN registry data elements. Significant progress was made on database design, platform selection, integration with the National Institutes of Health Common Data Elements project, data flow between clinical sites and the DCC, and plans for a patient powered registry. The CPRN DCC staff is on track to complete the registry database design in October which will pave the way for the data collection form development that is planned.
The meeting was capped by a brainstorming session with the Health Systems Innovation Research (HSIR) program leader Dr. Rachel Hess. Dr. Hess, who is involved in PCORI’s learning health systems that are part of PCORNet, was excited by the team’s progress. Dr. Hess, Dr. Horn and Mr. Gross generated new ideas on how to maximize the research opportunities presented by the CPRN registry.